#SamaritansRadar Twitter App – my thoughts on why this is extremely problematic

(CN: discussion of mental health, suicide, elements of self-harm)

This will be another mental health post, this time centered on the Twitter app that mental health and suicide prevention charity Samaritans have launched, called Samaritans Radar. You can read about this app on their website in this link: http://www.samaritans.org/radarpress The basic premise is that a user can sign up to the radar, and it will then scan the Tweets of people they follow on Twitter, flagging to the user if certain keywords are used that imply mental crisis or suicidal ideation. The user can then view their friend’s Tweet and make a judgment call as to whether this requires further action. Sounds good, right? Friends can look out for potentially vulnerable friends and step in when it seems they’re having a crisis. Here’s what I and many fellow sufferers of mental health conditions find problematic about this app. Now, I don’t think I have anything new input that hasn’t already been said by others, but I would like to have my say and add my voice to those of us protesting the issues around this app. I do want to throw in here in case people don’t read to the end that Samaritans is a fantastic charity and offers a lot of great help to people in very acute crises. For many people this has meant they were able to resist a suicide attempt when they might not have otherwise. I’ve read that the app is in no way associated with the volunteers who run the 24-hour phone service, so please do not feel discouraged about contacting them if you need to.

Many of an individual’s Twitter followers are strangers, not friends
The app is based on the Twitter list of the user, not those who may be in crisis. This means that, should I mention suicide or self-harm in my Tweets, any stranger who follows me and also uses the Samaritans app would get an email about this. I find this idea very uncomfortable and invasive, that followers whom I don’t even know would get specific emails highlighting the app’s perception of my mental health state and prompting this stranger to do something about it. You may be thinking that support must be good whoever it comes from, right? Well, no, not really. Support can come from myriad sources, but in general, if I were in a suicidal frame of mind and in acute crisis, the type of help I’d be looking for wouldn’t be from a stranger on Twitter who needed an app to alert them that things weren’t well with me. You might also be thinking “What’s the big deal; they’d see your Tweets if they follow you anyway.” It’s the idea of being monitored by strangers for what they perceive as signs of suicidal ideation, who are then prompted by an app on what steps to take. I think if you need to be altered via an app that I may be in crisis, then we’re not close enough for you to provide the type of help I need, anyway. The app would be much improved if the mental illness sufferer, i.e. the “targets” of this help, were able to provide a definite list of who could and could not be alerted by this app. Close friends and family being alerted of vocabulary that seems suicidal is a much better idea than any potential follower being able to take some form of control over my mental health, an idea which provides a nice segue into my next point.

We must have agency over our own mental health
There is something very unsettling and invasive about the idea of others deciding that I’m suicidal or depressed enough to warrant their intervention and/or the introduction of outsiders without my explicit consent. This is pasted from the Samaritans website, in the link I posted earlier (emphasis mine):

“Twitter’s wider collaboration with Samaritans includes a referral process which works in two ways: Twitter has Samaritans listed within their Help Centre as the go-to organisation for suicide prevention in the UK and ROI. When somebody gets reported as suicidal, the Twitter Trust & Safety team verifies the report and if they deem it accurate, they get in touch with both the reporter and the reported account, to share recommendations and contact information for Samaritans.”

Everyone I’ve spoken with or whose words I’ve seen about this would *NOT* appreciate this. If we are deemed to be suicidal by particular Tweets, when we may or may not actually be acutely suicidal at that moment, someone would “report” this in the name of help and we’d be contacted by outside sources whether Twitter or Samaritans or whoever. This removes agency; we have the right to control over how we deal with our mental health and don’t appreciate this control falling into the hands of strangers on Twitter, who decide that we merit intervention without actually talking to us about it. If you’re not close enough to send me a message offering support or asking how I am, then you’re not close enough to justify the involvement of outside elements. Many of us have different ways of coping with fluctuating severity in our mental illnesses; strangers will not know those nuances well enough and will likely try to involve outside elements when they are not actually needed.

Now, I’m aware that to some extent that the idea is for people who have lost an element of control and may not be able to help themselves in that moment, but you have to remember that these people have entire lives and other contacts, close friends, family, fellow mental health sufferers on their TL. Preventing their potentially imminent suicide probably isn’t contingent on your report if you are an effective stranger on Twitter. You also have to bear in mind that many people without mental illness tend to offer support and comfort via platitudes that actually tend to make things worse, but that’s another post altogether. Maybe I’m overreacting and people wouldn’t go to the extent of “reporting” if they are virtual strangers to the person in crisis. But that doesn’t mean this will never happen. Anyway, the point still stands: Do NOT involve outside elements in someone’s care without at least contacting them first. If you are not a close friend or family member, you will virtually never be justified to involve outside elements without consent, in my opinion.

It’s a “cookie cutter” approach
Using so-called key words and phrases to detect someone’s suicidal ideation is hardly going to be an exact science. People suffering from mental illnesses are a diverse bunch just as any group will be and we have different ways of coping with our health, with changing circumstances and different words we use to convey these issues. Some people are very explicit even when not in crisis, whereas some don’t mention things even if a suicide attempt is imminent. Personally, I think I am less open about mental health in general when I’m struggling, so if I were suicidal, the clue would be that I *don’t* mention these key words. I don’t know for sure; what I do know is that there is no set of clues that a person puts out when they are suicidal. One person’s “normal” might be another’s “in crisis” and vice versa. I know people who might mention that they are considering methods of suicide at a point when they are not in immediate crisis and don’t need intervention. I know people whose key words when they are suicidal are more likely to do with making plans, finalizing something, getting their affairs in order, becoming content or relieved (mostly because they have decided to make the attempt). The app’s approach will not pick up on all these nuances; it will give many false positives and miss many genuine positives.

What people also need to realize is that for mental illness sufferers and mental health advocates, many of these words and phrases are part of our general, everyday vocabulary. I talk about self-harm often, sometimes when I’m doing it/have done it that day, worried I’ll relapse soon, and sometimes when I haven’t done it for a long time. Many of us mention suicide a lot whether we are having suicidal thoughts at that moment or haven’t for a long time. You might say “Well, the user will see the Tweet and realize it’s out of context”, but it’s not as simple as that. If I write “I can’t stop thinking about self-harm”, you have no idea what I mean by that. I could mean I’m fighting the urge from minute to minute and need immediate intervention or I could mean that I’m in a temptation phase where I know I won’t do anything and that it will soon pass. I often have periods of intense fantasy about self-harm and suicide methods without there being a big danger of me actually doing it. Often the imagining itself is a great comfort. So did that tweet need reporting or not? What if it had said “I can’t stop thinking about suicide”?

The potential for abuse
Finally, the lack of privacy concerning the app, which is intrusive and unsettling as it is, provides a potential for abuse. Many people may have a stalker following them or trolls, who would then take the opportunity to harass someone who may already be in a moment of crisis. Also, many people suffer extreme mental distress even in periods where is little or no risk of them actually attempting or committing suicide, and the last thing anyone needs in those periods is being harassed or trolled. Even people with good intentions can make it worse by offering platitudes.

Basically, I and many others feel like they have done very little or no research with actual sufferers of mental illness on Twitter. It seems to have come from “higher up” where they thought this was a good idea without asking the people concerned. The app could be much improved if the people being monitored could explicitly choose a list of those who would be contacted in the instances of tweets suggesting suicidal ideation. Twitter is a place where many of us who suffer from mental illness find we can be open and often already we receive an enormous amount of support. My fear is that this level of monitoring and intervention will make people shut off. I and many people I know have already explicitly stated that we do NOT want any of our followers using this app to monitor our Tweets. If you want to show support to your friends, try sending a message, ask how they are, if they need to chat or vent, if they need support. Many people don’t know what to say to someone in crisis, and that’s o.k. If you are not a mental health professional, then your friends likely don’t expect you to be able to always say the right thing. Sometimes just an offer that you’re there to listen or even just a sending of virtual hugs or a ❤ can be enough. It means we know you care but may not know what to say.

I hope that the better elements of this app can perhaps be developed into something better and it raises awareness of the problems surrounding this kind of thing that people without mental illness may have never considered.

ESA interview experience

Today I had my second interview with an ESA adviser–for those who don’t know, it’s Employment and Support Allowance, and you can read more about this benefit on the government website at https://www.gov.uk/employment-support-allowance/overview. There are two groups that claimants are put into, a work-related and a support-related, and surprisingly (or unsurprisingly considering this country’s treatment of disabled people these days!!!) I’m in the work-related group, so I’m always very nervous going along to the interviews as I’ve heard of people in the work-related group being forced onto various courses and placements.

However, I’m surprised and pleased that today went really well! The adviser wasn’t the one I saw last time, but she was great. She got the gist of my situation as she hadn’t met me before, and then I basically told her my plans, i.e. that I’m starting the admin volunteering in a few weeks and hoping to go to uni again next year. She was completely understanding of the fact that a voluntary position has so many more accommodations for me and the managers are much more understanding than an employer would be if I couldn’t make it in or can’t manage a particular task and so on. I told her that I can possibly use the admin experience later on to get a few hours a week in admin, which is much easier on my health than an actual retail job would be (again, volunteering in retail is tough for me, but much easier than a job in retail because of the compassion and accommodations they can make). But right now, I’m just seeing how it goes, and trying to keep up the charity shop once a week and the admin once a week.

My file just said lupus and “other conditions” so that wasn’t very informative! She was really cautious about asking me about my health details in case I wasn’t willing to go into the details, which was kind of nice actually, although I have no issue with it! I explained that most of the problem is the hypermobility particularly while using the manual wheelchair. I told her truthfully that I really want to work, as most people on benefits actually do, but right now using the manual doesn’t grant me independence, as I need someone to push it most of the time, although it does allow me to get out a lot more. I’m trying to acquire a motorized scooter, as I’ve mentioned before, so hopefully if/when I do, things will be much easier on me.

She was very sensitive to my needs and limitations. I mentioned mental health vaguely saying I wasn’t sure if it was on the file and she said to me that that’s something she really takes into account because if she pushes someone with mental illness too far and they suffer a relapse, then she would share something of the blame for that. This is pretty refreshing to hear from a Jobcentre employee to be perfectly honest! She’s happy to leave me to my plans for the moment, including getting further in my application for PIP, because as she says, there’s no point in them pushing me into mandatory things right now that I don’t like or won’t manage when I already have plans in place for myself, things I like and knowing my own limitations.

She did say that unless I have a dramatic change in my health, I will be in the work group for at least two years before they’ll consider re-assignment into the support group. I’ve been on ESA for about half a year now, I guess, so that’ll be another year and a half probably. It’s kind of ridiculous, but as I’m not having problems in the work group yet, I’m happy to leave things as they are. I don’t know if there’s a lot of difference in the policies and services here in Scotland and other parts of the UK, but a lot of the horror stories are coming from England, although we’re not perfect here either. (I’ve had problems with DLA and my sister’s having a lot of trouble with being forced into workfare when she has a two-year-old to look after.) But I’m really happy with my situation with ESA so far, and I realize how blessed I am to be able to say that. Now for the hurdle that is PIP, eek! (Considering they haven’t replied to my letter I sent three weeks ago, it’s not a good omen!)

Latest wheelchair adventures

So, as time goes on and on, I’m discovering more and more how the world is totally NOT adapted to wheelchair users, and that I can’t last much longer with a manual chair, with my upper body also affected by my conditions. It’s hard enough finding the physical strength to push myself, but my shoulder joints in particular are not feeling good, acromio-claviculars (where the collar bone joins the shoulder). I’ve been holding off on steroid injections in my shoulders until I’m desperate, but propelling myself in a manual chair is not exactly beneficial for the poor things.

A few weeks ago when I went for the interview for the RNIB position was the first day I had a proper day out alone with the chair. Usually I have my twin sister there to push me, although I’ll go around on my own in the shops or sometimes I manage around town while I’m waiting for her to get off work, for example. This trip was all on my very own from start to finish, so I was quite nervous how well I’d manage. Luckily, I can walk with my sticks, but obviously it’s not easy to push the wheelchair from standing and use the sticks at the same time, but I did manage just pushing, seeing as (funnily enough) my hospital is up a hill that I could never propel myself up. I managed the bus journeys fine on my own–I folded up the chair and sat in a seat, first to give my poor bum a break and also to sit facing forward on the journey. Traveling backwards is fine for local buses, but not for a whole journey to another town, even without my nausea. The biggest problem with the buses is the pole they have beside the wheelchair berth; it makes it very difficult to maneuver in and out of the space and I often get myself somewhat stuck.

The big mistake I made that day was getting the local bus into town and overdoing things. First of all, I made the journey backwards, and oh, of course, my nausea was so so bad that I spent the whole journey screwing up my face to hold back from throwing up. Lovely! Getting around town wasn’t too bad; I went to the mall to get myself a Subway and to have a look for some Christmas gifts (I know, I want to pretend it’s not happening, but I’d be ecstatic this year if I actually manage to get the few gifts I’m buying sorted well in advance for once!). In Subway it’s always quite tight spaces, even without a chair, not only in between the tables but going around the queue as the standing space is bordered by tables on one side and then the toilets at a very tight corner. Not exactly intelligent design. I got my chair round and when they asked if I would be sitting in, I joked “If I can find a table!” I did hear one of the workers asking another if there was a particular table free as she had a customer in a wheelchair waiting, but I never heard anything after that, so I actually ended up sitting just outside the restaurant area in my chair and called my sister to chat until someone close by finished up and I managed to get a table at a more spacious area.

The mall was generally good, nice smooth floors and elevators as you’d expected. The only issue was some fairly steep gradients; gradients in grounds and floors don’t seem much at all until you’re rolling up or down them, let me tell you! The slightest incline in a pavement can make it virtually impossible for me to keep in control of the chair. One in particular was a challenge to get up, and partway up a child stepped in front of me; I had to keep going or I’d be rolling back down! (Obviously he got out of my way. :P) As for going down inclines, I thought a few times I’d end up on the heels of people in front of me, so I often waited for a bit of free space. Just little things like that you don’t consider would be a problem, and maybe they’re not for many manual wheelchair users with good upper body strength, but they were exhausting for me.

When I was getting the bus back to the hospital in order to catch the bus back home was when things really went to pot! A guy I’d got talking to in one of the shops ended up bumping into me at the bus stop and before long we were chatting again like old friends, which was nice. What wasn’t so nice was him telling me to get a particular bus and others at the bus stop agreeing it would get me back to the hospital. First, I missed the one that came because there was already a wheelchair on it–a third guy came along and had to be turned away too, so he and I had a bit of a moan about it. It’s frustrating that buses will only carry one wheelchair. There must be people who go out with other people in chairs–then they must take extra buses? As the guy was saying to me, they could make at least another wheelchair space, especially as there’s often extra space for buggies which could go into a designated wheelchair space.

Anyway, when I finally got on the next one, I got settled in and then the fare man came to sell the tickets. I asked for the hospital and he just said, “You’re on the wrong bus, mate.” I was like “Are you serious?!”, explaining people had told me this one! He was really helpful and got me off at the next stop and gave me directions to the bus stop I needed. Unfortunately it was up a hill. I could not manage at all and had to push my chair up the hill again. Then when I got the chair onto the bus, I was still standing when the driver started driving and so I went flying! On top of that, when we got to the hospital, I had to wait ages and knock on the driver’s booth to get him to get the ramp because, in his words, “I forgot you were on board, pal”. Charming!!! I should mention that this whole incident with the buses was even more stressful because my sister had told me the last bus home was at 16.10 (which it wasn’t, by the way!).

The same trip to Dundee this week was not as bad because I didn’t go into town, but the bus home did break down, so we had to get onto another one on the motorway. The driver made sure in advance I’d be fine, and when the passengers were disembarking, at least three asked me if I needed any help; one woman offered to carry my backpack. I thought it was really kind, but I got an insight into why so many disabled people find it frustrating to be constantly offered help. I thought, the third person would have heard me refuse the first two, but still asked me as though I’m not sure of what I can and can’t do, which is annoying, to be honest, but I was grateful for the offers. We disabled people very often feel torn between being grateful for offers of help but resenting something in it at the same time. I know people mean well most of the time, but there is an underlying issue sometimes.

Anyway, I didn’t have too many dramatic problems, thankfully, although I really do struggle in the manual chair when I’m on my own. In preparation for returning to uni to do my Masters, I’m setting up a fundraiser page so I can get myself a motorized chair, yay. A manual chair is very stressful on many of my joints due to hypermobility. Fingers crossed! One problem I did have was in Home Bargains, where the wheelchair trolleys were being used by employees to stock the shelves. ¬_¬ I did complain to them on Twitter at least.

But as every day in a wheelchair teaches me again, the world has a long way to do in terms of accessibility.

New volunteering position–admin assistant for RNIB

Yet again, it’s been far too long since I wrote anything here. As usual, it’s been a combination of crap health and not having much interesting to say! (Or indeed, me getting little bits out on my personal Twitter about my day and forgetting to collate everything into a post here.) So, I thought I’d write a post generally about my recent days out and the new position I’ve got volunteering for the Royal National Institute of Blind People (RNIB). They were looking for an admin assistant at the hospital about 20 miles from me, and I’ve been looking for admin work, so it’s the perfect combination. I’m hoping later on if I can get a small part-time job to get something in the admin sphere rather than retail, although I’m continuing to work in the charity shops, each one every two weeks. So many allowances and accommodations are made for me in volunteering that are just not easy to find in a paid job right now. I’ll probably write more about the antics with my first proper days out alone with the manual wheelchair in another post.

I went through a couple of weeks ago to Dundee for the interview and met the woman I’ll mostly be working with, Ann-Marie, and also one of the guys who works through in Glasgow, Blessing. The interview was very informal, and I felt I did really well. I’d answered a lot of their questions before they actually came around, haha. I have no previous admin experiences, but of course through uni and just generally computer use, I’ve become very computer-literate and tech-savvy, and am very comfortable using a lot of programs. I’m also learning coding languages. The questions were more based on how you prioritize and ensure patient confidentiality and this kind of thing. I think it also helped I’d done a placement in the orthopedics department at my local hospital, although this work is more behind the scenes with the RNIB rather than the NHS.

The RNIB basically provides all sorts of support for people with impaired sight or sight loss, including general emotional support with coming to terms with sight loss or more focused approaches to finding employment and that kind of thing. You can read more about them on their website http://www.rnib.org.uk if interested. They also have many aids and accessories for sale to help with everyday living.

Later that day, Blessing emailed to let me know I’d been successful, which is great news! I went in a few days ago more to just hand in IDs and got a short introduction to the people around and a look around the department. It’s a fairly small outpatients department, so it can be quite a pain with the wheelchair. The staff toilet is not that accessible either as it has two doors and a corner to get in, so I’m not even going to try with the chair! It’s fine for me as I can use my sticks, but it’s not really acceptable. They weren’t sure how mobile I am so they sorted out making sure I could get my wheelchair under the desk and stuff, but I said I’d probably shift over to a normal chair while I’m there anyway, as sitting in the wheelchair for too long gets very uncomfortable and sore on my hips.

I’ll mostly be working with Ann-Marie and Nina, who is sight impaired herself and brings in her guide dog, Ivy, when she’s in working. I got to meet Nina and Ivy, and it’s very exciting to have regular contact with an animal again, since I had to stop volunteering at the cat shelter. Ivy’s very playful and lovable when her harness comes off, and it’ll take me a while to get used to a boisterous dog! She’s absolutely lovely.

My main tasks are a hodge-podge of things, really, depending on what needs done. Ann-Marie basically needs someone to tackle the piles of paperwork, so much of it will be entering data and doing spreadsheets; I told her I’m one of those odd people who fairly enjoys doing spreadsheets and statistics and entering data, haha. I didn’t quite tell them about my elaborate spreadsheets for my novel writing, my book collection…! But there also some other tasks such as printing Braille stickers on our leaflets so that Nina can get around more easily, organizing and ordering documents, also phoning patients and booking venues for various workshops that they offer. It’s one of these positions where you more or less learn your way around on the job and there are always people around. I met a few of the consultants in the department too.

Pending my references, I should be starting in a few weeks. I’m very excited! Of course, it’s a big undertaking physically, as I have to travel through to Dundee one day a week and I’ll still be doing a day in my local charity stores on top of that. I’ll probably take the wheelchair through most times, just to be on the safe side, even if I end up using my sticks while I’m there. There is a bus link between the two hospitals, so it’s not too difficult for me to push my chair up the hill to my local hospital to catch it. The charity will also refund my travel costs–I don’t claim bus costs back from the local stores, as it feels very rude and unnecessary, but I probably will claim for this as it’s quite a lot of money for the return ticket each week. They know about my lupus, and when I went to hand in the IDs, we ended up just chatting for a while, and the topic did come up so they’ve got some awareness of how it affects me. The great thing about volunteering is that they are usually so much more willing to make accommodations, and of course if you can’t make it one day or can’t do an assigned task, there’s not the same pressure as there might be in a paid job.

So it’ll be good to get me out of the house more often and build up some experience. I’m hoping I do manage the extra load, but I was working back up to doing the two charity shops per week as I was before my surgeries last year anyway. I’m excited to start. 🙂